Aaaaaahhhhhhh! I received my Remicade infusion this afternoon.
The vitality this amazing drug gives me is slowly working its way into and around my cells, blocking all those crummy little immune attackers that are friends to most people’s bodies. In mine, they go haywire and have a big party. Without the big pac-man, TNF blockers, I have an immune response that is slowly trying to fuse my spine together (among many other lovely things.) Before I started taking the Remicade – over 4 years ago now – I couldn’t function from the pain. I was on high doses of anti-inflammatories, nerve/seizure meds, and heavy duty pain killers including the Fentanyl patch, and a chemotherapy drug called methotrexate. In February I will celebrate a three year anniversary of going cold turkey off all pain killers (well – I don’t count Advil) and I now only need my infusions, but…
Want to know what keeps me up at night? – – – thoughts of the Remicade stopping to work or losing the ability to be able to get it for insurance or financial reasons. I put six little vials on todays image – they are $700 each and that doesn’t include administering the drug or various other costs associated with this medication. It’s terrifying to even talk about it – but I will because people need to know what this thing called AS does to not only our bodies but our lives. And, I’ll keep talking about it because such an amazing medication needs to be available to more people who are suffering and have no access to a medication that will give them their lives back. I’m fighting for them – in perhaps an unconventional way – but they – YOU – are what keeps me going even when it’s easier to just stop.
Day 95 was created with pen & a blush of color.